To change or not to change - translating and culturally adapting the paediatric version of the Moral Distress Scale-Revised (MDS-R)

Abstract

BackgroundPaediatric cancer care poses ethically difficult situations that can lead to value conflicts about what is best for the child, possibly resulting in moral distress. Research on moral distress is lacking in paediatric cancer care in Sweden and most questionnaires are developed in English. The Moral Distress Scale-Revised (MDS-R) is a questionnaire that measures moral distress in specific situations; respondents are asked to indicate both the frequency and the level of disturbance when the situation arises. The aims of this study were to translate and culturally adapt the questionnaire to the context of Swedish paediatric cancer care. In doing so we endeavoured to keep the content in the Swedish version as equivalent to the original as possible but to introduce modifications that improve the functional level and increase respondent satisfaction.MethodsThe procedure included linguistic translation and cultural adaptation of MDS-R’s paediatric versions for Physicians, Nurses and Other Healthcare Providers to the context of Swedish paediatric cancer care. The process of adjustment included: preparation, translation procedure and respondent validation. The latter included focus group and cognitive interviews with healthcare professionals in paediatric cancer care.ResultsTo achieve a Swedish version with a good functional level and high trustworthiness, some adjustments were made concerning design, language, cultural matters and content. Cognitive interviews revealed problems with stating the level of disturbance hypothetically and items with negations caused even more problems, after having stated that the situation never happens.ConclusionsTranslation and cultural adaptation require the involvement of various types of specialist. It is difficult to combine the intention to keep the content as equivalent to the original as possible with the need for modifications that improve the functional level and increase respondent satisfaction. The translated and culturally adapted Swedish MDS-R seems to have equivalent content as well as improved functional level and respondent satisfaction. The adjustments were made to fit paediatric cancer care but it could be argued that the changes are relevant for most areas of paediatric care of seriously ill patients.

Important situations that capture moral distress in paediatric oncology

“…This national cross-sectional survey at all paediatric oncology centres in Sweden focuses on five situations (items) added to the Swedish paediatric MDS-R. The five items were added in a previous study because participants in cognitive interviews considered them to be important [14]. The appropriateness of adding items to validated instruments could be questioned as it, for example, makes it difficult to compare the total MDS-R scores with other studies, and for that reason the items were initially not included in the previously published results from this national study and in the analysis of the Swedish total MDS-R scores [11].…”

“…One of the five added items was item 24 "To not talk about death with a dying child" [14]. The decision to include that item can be questioned, as it could be argued that this situation was already included in the original version of MDS-R, also supported by the results of the inter-item correlation test.…”

“…Field notes were taken and discussed in a review group (n = 7) with expertise in paediatric oncology, ethics, translation and questionnaire design. The situations described in the 21 items in the Swedish translation of the original MDS-R were found to be relevant [14]. However, some adjustments were necessary, for example, the indicated frequency was found to influence how the respondents indicated the level of disturbance (intensity), and thus the intensity was placed before the frequency in the Swedish MDS-R.…”

“…When the paediatric MDS-R was translated and culturally adapted to Swedish paediatric oncology in 2014-2015, the target population was HCPs (RNs, MDs and NAs) in hospital settings [14]. The aim was to keep the original content as much as possible to be able to compare results across studies.…”

“…Epstein et al increased the number of items at team-level (such as poor communication and interaction) and system level (for example excessive requirements of documentation). In the process of cognitive debriefing of the Swedish paediatric MDS-R, two focus group interviews and 16 individual cognitive interviews were performed in accordance with Collins [16] with HCPs, including RNs, MDs and NAs, in paediatric oncology at University Hospitals [14]. Field notes were taken and discussed in a review group (n = 7) with expertise in paediatric oncology, ethics, translation and questionnaire design.…”